To Know or Not
May 19, 2015
More than 10,000 children in Japan have been conceived through what’s called donor insemination. It’s a kind of assisted reproductive technology that allows couples to have children using donated sperm. It was introduced in Japan more than 60 years ago. Donors remain anonymous, and most children are not informed they were conceived in this way. Japan's ruling party is preparing the country's first bill on assisted reproductive technology. The draft says access to information about donors is to be decided at a later time. But some people say they want to know their genetic origins now.
NHK World’s Atsuko Iwasaki has the story.
Hideaki Kato was born by donor insemination. He found out 12 years ago, when he was a medical student. He had his blood tested, and that of family members, as part of clinical training.
"My white blood cells have protein types 4 and 4,” he says. “My father has 9 and 11. They don't line up."
He asked his mother about the mismatch, and got an unexpected answer. She told him his father had been lacking in sperm. So, he was conceived with a donor's sperm at a University Hospital.
"I felt deceived,” Kato recalls. “I've been connected to my parents and shaped by our time together. But suddenly, it seemed that half of myself was going blank. Like the ground under me was collapsing."
Kato obtained a list of some 400 medical students who may have been donors. He hoped to get any information he could about his donor. Last year, he contacted a physician with responsibility over such matters at the hospital, asking for further information. But the doctor replied that none of the information is left.
Kato says, “I want to know my roots, or half of what’s in my blood. How was I born? Where did I come from? This basic information shapes a person's life. Hiding it is wrong. It forces someone like me to lead a life built on lies."
Sachiko Ishizuka is another donor-conceived child. She expressed sentiments similar to Kato’s at a recent symposium about access to donor information.
"I feel my identity is shaky,” Ishizuka says. “Knowing who the donor is will help my self-image. I have this uncomfortable feeling that I was made from my mother and a thing. I want to feel that I was born from my mother and an actual person."
Some parents have decided honesty is the best policy. One woman in her 50s had a daughter 20 years ago thanks to donor insemination. Her doctor told her to keep quiet for the good of the family. She says, "My husband and I had decided to take this secret to our graves."
As her daughter grew, however, people noticed she did not look like her parents. The family went out together less often as a result.
"I kept the secret to protect my child,” the mother says. “While teaching her not to tell a lie, I myself had perpetrated a huge one. It eventually became a burden on my mind. When I was alone, my eyes filled with tears and I couldn't sleep."
While agonizing over what to do, the mother came across information about a group of parents in similar situations. She learned about cases overseas and heard what the children had to say. Persuading her husband to tell everything took two years. Her daughter finally found out 7 years ago, when she was 13.
"I was surprised, of course, but also grateful to my parents for telling me face-to-face,” the daughter says. “I respect my father. He's my dad, no matter what."
"I feel we’ve built a family again, from the real starting point," says the mother.
The identity of the donor at the earlier starting point, however, is still unknown.
The daughter says, "I don’t necessarily want to meet him, but I am interested to see what he looks like. I wish we could at least have the right to obtain medical data about him."
Access to donor information would carry risks. Sadaomi Imamura is an Executive Board Member of the Japan Medical Association. He says there is no consensus on how it should affect parent-child relationships. He worries it could disrupt the lives of many families. He also is concerned that disclosure may discourage donation.
"If the anonymity policy is changed, allowing for disclosure, I believe there is no doubt the number of donors will plummet,” Imamura says. “That will have a severe impact on couples contending with infertility."
Sho Beppu and Aki Shibuya spoke with Professor Naoaki Kuji from Tokyo Medical University about donor insemination. He has been dealing with the issue for 20 years.
Shibuya: What is the situation around the rights of access to information about donors in other countries?
Kuji: So with regard to this donor insemination treatment, all countries started out with anonymity, meaning that donors won’t tell their names, and parents won’t tell their children that they were conceived through this treatment. However, even though parents may not tell them, children may find out later by accident. Also, children have started to demand donor information because they wanted to establish their identity. Since 2000, in all countries, there is has been a movement to remove this anonymity. The United Kingdom and the Netherlands are examples of countries that removed anonymity. On the other hand, countries that continue to uphold anonymity include France and Belgium. Also, there are countries that may not fully disclose the identity of donors, but they may disclose information about their occupation and what they like; non-identifying information.
Beppu: Now turning our eyes to Japan, there is an ongoing discussion around a bill on reproductive medicine. But some argue that the rights of access to information about donors should be postponed. What are the reasons behind these voices?
Kuji: Well I think especially in Japan, parents do not want to tell their children that they were conceived through this donor insemination because Japan places importance on kinship. On the other hand, donors feel ashamed to tell about this donor insemination and becoming a donor. So this treatment is conducted in secrecy. If we allow this access to information about donors, I think a lot of people are concerned about the situation where parents may not tell their children and we see a decline in the number of donors.
Beppu: So is the tendency to preserve secrecy particularly strong in Japan?
Kuji: It’s actually happening all over the world, like in Sweden. This is one of the countries that allowed access to information to donors. But for quite a long time, more than half of the parents did not tell their children about their donors.
Shibuya: I believe this is a very complex issue, but what do you think we should do as a society?
Kuji: In a nutshell, currently this treatment is in secrecy. But I think we should shift it towards being accepted by everyone in society and that people should not feel ashamed of it. Then parents would start telling their children about it, and also donors would be confident and maybe even tell their own children about it.